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22 Jan 2010 13:53
  • Kim
  • Kim
She's right a good sunscreen works to manage sun sensitivity rashes. Also, get a few cute hats and have some fun with that. I wear hats a lot in the summer and people came to know me by my hat wardrobe. Often gifting beautiful and funny hats to me. I don't wear the funny one, but it's fun to laugh at them when I receive them. I don't wear hats all year long, because I live in north eastern Wisconsin and it's dang cold and gloomy here in the winter. I wear winter hats, that keep my ears warm, but makes a mess of my hair.

Are you on Plaquneil? Plaquneil helps skin rashes too.
Category: Lupus
22 Jan 2010 14:00
  • tortie
  • tortie
Do we have an inbox option?

Are our email addresses private?

Michelle
Category: Social Chat
22 Jan 2010 14:09
  • youngjoan
  • youngjoan
You will now be able to send an e-mail to anyone on the user list as well as establish Facebook-like connections.

To use these features, go to the 'List of Web Site Members', choose one, and use the 'message' and 'connection' tabs.

Joan
Category: Forum Information
22 Jan 2010 14:41
  • tortie
  • tortie
I have learned that when you send an email from this site the recievers address is private until they respond and then they will show their address.

I'm questioning and testing regarding privacy and security concerns.
Category: Social Chat
22 Jan 2010 14:52
  • MaryEllen
  • MaryEllen
Does anyone on this forum know anything about Promacta? Has anyone tried it? If so, what were the results?

Thank you. MaryEllen
22 Jan 2010 15:02
  • julia
  • julia
There is another blood test they are supposed to do before starting Imuran but i cant remember the name of it. I think its an enzyme It rules out a problem that makes sure the Imuran wont work something like 100x stronger dose than it is. The call might just have been to get this test done.
Ive been on Imuran for 2& half years now and have had no probs with it and kept my counts up lovely!
Good luck
Julia
Category: Lupus
22 Jan 2010 15:08
  • tortie
  • tortie
Don't forget to watch the Haiti fundraiser on TV tonight. I know it's being broadcast in NA.
Category: Social Chat
22 Jan 2010 15:32
  • tigereyes
  • tigereyes
Ive been on plaquenil for over 3 yrs now. The only side effects I have had is stomach upset. But that too comes and goes.
Category: Lupus
22 Jan 2010 17:00
  • Ann
  • Ann
I don't know if it works properly but if you hit the link that says 'Show Latest Posts' and then on the drop down box choose 'Since Last Vist' that seems to be the most like the old Active Discussions although it doesn't lay things out as nicely.
Category: Social Chat
22 Jan 2010 18:30
  • tacmom
  • tacmom
I'm still trying to get used to this site. It "looks" pretty, but it is so darn slow that I'm tempted to post on the old site. I know I need to move forward on here though!!

Anyways, Caitlin had her IVIG last week. It didn't really boost her count at all. She only went up from 19 to 24. They had to treat because she had some bleeding and they were afraid it was internal bleeding. They decided to put her back on a high dose of Prednisone last Tuesday and we got a count today. No response again and her count went down to 20, but at least this time...she has no bleeding symptoms. I'm worried once she finishes the steroids though, we'll be dealing with some symptoms.

I have a feeling Caitlin will be starting the Rituximab/Rituxan this week, pending insurance approval. I truly hope that this will work for her because she is in the "angry" stage now where she is mad that nothing is working. If she wasn't in anything...that would be one thing, but she is being restricted at doing something she loves. I am more worried about the side effects of Rituxan than anything. If she has the same kind of reaction that she had to IVIG, she is going to be missing alot of school the next few weeks (if we start) and I don't even know what to do about work. And I HAVE to work...I don't have a choice because my husband is self-employed so I carry insurance for the 4 of us through my employer.

Trying to remain positive for Caitlin. She does have another competition in the morning and she should have fun with that. (No dangerous tumbling or flying) One of their teammates is out due to having a concussion earlier this week and she is really not able to remember anything. (She got it during a pep rally at her high school when she was basing for a stunt...the girl on top of her fell down on her and then she hit her head down on the hard gym floor.) They said it can take up to two weeks before everything comes back so she doesn't know who some of her teammates are or any of the routine. She did go up to Caitlin (one of the few names and faces she recognized) last night and say that she finally knows what she goes through with all of the pokes and prodding and it is not fun. I pray they all pull through tomorrow and it would be so nice if they could get a win, but that is wishful thinking at this point!
22 Jan 2010 18:38
  • tacmom
  • tacmom
I am sorry to hear Tim's counts went down again, but I know what you mean...nothing is unexpected once they've been going through low counts for a while now. What a hard decision that you both have to make coming up...a splenectomy or something else.

We're starting to head down the same pathway too where some things are not working anymore. I just don't know when you can say it truly doesn't work anymore though. Because Prednisone worked really well for Caitlin last time and this time, it had no response at all. I don't know if this means she won't get a response if she goes on Prednisone again.

I hope Tim is remaining in somewhat good spirits. If this hadn't hit us smack in the middle of competition season, Caitlin would be "ok" with all of this. We need her counts to be low in the summers and high during the year, but of course...it's just the opposite! Continue to hang in there! I am hanging on only because we're not out of options yet..
22 Jan 2010 19:15
  • Ann
  • Ann
Was Caitlin taking pred straight after stopping the Nplate and not getting a response? I ask because reading up on Nplate, I see that when on it the body's natural TPO is suppressed so when you stop the Nplate some people won't make platelets at all. And of course if you're not making platelets there are none for the pred to preserve. That happened to me on missing a dose of Nplate and crashing, the pred did absolutely nothing.
22 Jan 2010 19:22
  • Ann
  • Ann
Will they do a low dose rituxan? If not then it's maybe worth looking into as there is a less likelihood of side effects.

I'm with you with the slowness of the forum and sadly when it gets busier it's going to get even slower. If you go back to the old forum it feels that it really flies.
22 Jan 2010 19:27
  • Sandi
  • Sandi
I am going to look at the stickies tomorrow and move the important ones.

As for the active topics, it might be a good idea to just start posting all new topics here. I don't know how feasible it will be to move all of the active topics. We are looking at keeping the old Forum up a little longer than stated.
Category: Social Chat
22 Jan 2010 19:29
  • Sandi
  • Sandi
Jen:

I always felt that you had Lupus too and have no idea why you were not properly diagnosed. I'm glad your old guy retired and you have a new doctor. Maybe good things will come of it.
Category: Lupus
22 Jan 2010 19:35
  • Sandi
  • Sandi
Hi
Spooky? Do you not get out much? :woohoo:
Category: Social Chat
22 Jan 2010 20:13
  • Kim
  • Kim
Hi
Hi there, although I'm Kim here, no longer Kimil, figured I have not lived in IL for so long, I should drop the il, but it's me, now just Kim and I'm from Wisconsin, been here 5 years, so now is a good time to change and since I was one of the first to register, I get to be Kim. I had to be Kimil on the other forums, because there was another Kim.

I like the new forum boards, seems easy to me, except for a few little things I'll have to get used to. I don't like having to log on each time and I wish when I clicked the link in the email notice it would just take me there, without having to log on. I find it easier to read through the posts and I love the option for email notice when someone posts to a discussion I'm following.
Category: Social Chat
22 Jan 2010 20:15
  • Kim
  • Kim
That's good you're on plaquenil...rashes might be worse without it and it generally helps joint pain and fatigue
Category: Lupus
22 Jan 2010 20:31
  • Ann
  • Ann
Oh sorry I was thinking of the wrong thing. Can't edit or delete posts though so have to leave it there.. oops.
Category: Social Chat
22 Jan 2010 20:31
  • Sandi
  • Sandi
Ann:

I hope Rituxan works for Caitlin and gives her a break already! Most people do fine with few side effects - less than IVIG usually. Most side effects occur during the infusion and are dealt with then. Few side effects occur after.

The main thing you'd need to watch for is serum sickness. I had it, and it is listed as being more common in children. That can begin 2 to 4 weeks after the first infusion. It's miserable.
22 Jan 2010 20:41
  • tigereyes
  • tigereyes
I think its always been in the back of my hema mind that I have something else going on. My counts were down to 20 today without a drop in the prednisone. So there is definiatly something going on. They both agree it is some kind of connective tissue disease. It does kind of frustate me that for the past 3 years Ive kinda been pushed along. Today the dr had 2 med students with me, they seemed very eager to ask questions and ITP and all my other issues. One of them looked my age and had so many questions. So I guess Ill know more in 2 weeks after all my labs come back and they give me some options for treatment. Sadly they both feel that rituxian is no longer a treatment option for me. The rhema does think it may harder to dx everything since the rituxan may start working.
Category: Lupus
22 Jan 2010 20:47
  • DebbieC
  • DebbieC
Hi
Hi Jenuk, This has been planned for a while but it happened all of a sudden. I was surprised. I was only the first person to post on the Social Chat site here. I hope people will like this format and find it easy to use. I am getting used to it. Have a good week-end, Debbie
Category: Social Chat
22 Jan 2010 21:05
  • CindyL
  • CindyL
I PM'd Joan about this, and she replied back that the in box is now set up, but I can't remember how she told me to access it. I'll print out her PM tomorrow and check it out.
Category: Social Chat
22 Jan 2010 21:06
  • CindyL
  • CindyL
I PM'd Joan about this, and she replied back that the in box is now set up, but I can't remember how she told me to access it. I'll print out her PM tomorrow and check it out.
Category: Social Chat
22 Jan 2010 21:08
  • CindyL
  • CindyL
I PM'd Joan about this, and she replied back that the in box is now set up, but I can't remember how she told me to access it. I'll print out her PM tomorrow and check it out.
Category: Social Chat
22 Jan 2010 21:36
  • tacmom
  • tacmom
Ann...Caitlin's count went up after stopping Nplate. She started a pulse of steroid immediately after stopping to avoid crashing so quickly from stopping Nplate and her count one week afterwards was 135. Then we did nothing for almost 3 weeks and she had her IVIG last week. She's been off Nplate for a little over 6 weeks now.

Sandi...thanks for that! We will definitely watch for serum sickness. It was just a tough week emotionally for me last week feeling helpless when she was throwing up so much.
22 Jan 2010 21:40
  • Angel85
  • Angel85
Thanks, I hope they continue to rise too, i want to start the new year on a good note.
22 Jan 2010 21:50
  • Sandi
  • Sandi
Hi
Kim:

They are working on allowing Log-ins to last longer. Quite a few kinks to work out, but getting there.
Category: Social Chat
22 Jan 2010 21:58
  • lucidawn
  • lucidawn
I'm sorry about Caitlin, too. Its so hard on them, and on us watching whats happening with no power to change it. I agree that its likely the initial phase of coming off the NPlate causing a problem with platet production right now. Maybe she will start making them and then pred will work again.

I am going to take Tim to his pediatrician. Interestingly, today when I came home for a nap I had a dream that his ped was talking to him. He's a real joker and very good with kids(and Tim really like him).In the dream the ped came out and started joking with Tim and saying, 'Boy,why aren't you taking your medicine?" So I asked Tim, "do you feel like a kid or like we treat you like a kid with your meds" and he said no. I told him about the dream and he said, "I've been really wanting to go see Dr. Gunter lately. Lets make an appointment." So, maybe his ped can talk some sense into him. He's the kind of ped that makes paper ties and wears them to work,lol. He's an excellent Doctor too. I told my boys we've given him great training with MS, Congenital Heart Disease, Asthma, and Chronic Refractory ITP.

Anyway, I often have these sorts of dreams that help me make tough decisions. Seems to be God's major way of guiding me directionally.
22 Jan 2010 22:08
  • lucidawn
  • lucidawn
Tim hardly had any symptoms from the Rituxan...but he didn't respond to it either. It is still possible he will get a response in the future though.

VERY SCARY about the girl who bonked her head. What if it had been Caitlin?! OMGosh! I would freak out! I'm sure you deal with that all the time though.

I hope, as with all our kids, that you find the right meds for Caitlin. I never thought Tim would be refractory. I know his hemonc never did. He still has trouble believing it.

We will either be back on the Promacta (if Tim agrees), or probably try the Imuran/Cyclosporin/Cellcept cocktail for Tim. Splenectomy...I just can't get it out of my head that its permanent, it has lasting negative affects (immune suppression, higher risk of developing cancers, the extreme bleed risk after surgery, etc). I don't know. It just seems so radical and last ditch to me...not something you do cause you don't like your meds.
Displaying 61 - 90 out of 71521 results.

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